Abstract [en]

Background: Each year, 1% of all children born in Sweden are diagnosed at birth with congenital heart defects. The child with this diagnosis and its parents are in great need of care. Key components of this care are support and encouragement, information given at the right level for the receiver, and making sure that questions are answered. Parents of children with congenital heart disease suffer to a greater extent than other parents from some form of psychosocial stress or anxiety related to their child's diagnosis. Aim: The aim of this study was to describe parents' experiences of having children with congenital heart defects. Method: A literature study based on qualitative scientific articles. The articles were found through the databases CINAHL Complete, MEDLINE, Academic Search Elite and CINAHL with Full Text and ten articles were included after quality control. Findings: The study's analysis of the articles revealed four themes that characterized the parents' experiences as the children grew. These were; feeling of inadequacy and insecurity, new complex situation, stress, and also support and trust. Conclusion: In the new situation in which a child where diagnosed with congenital heart defect, the whole family underwent major changes in everyday life. Stress was a constant burden and parents experienced inadequacy and insecurity in the parental role. The need for support and trust from both health care workers, friends and, family was great when dealing with the situation. Relevance to clinical practice: The results of this study will hopefully contribute knowledge about parents' experiences of having a child with congenital heart defects. The study may sensitize the needs of this group of parents, which can be helpful for the development of guidelines within this framework of nursing care.